Ballston Lake family keeps on running as man they love devastated by disease

Restaurant-owning family keeps striving as man they love devastated by illness

By Steve Barnes Senior writer

Published
5:00 am EST, Monday, February 14, 2011

Courtney and Hugh Kelleigh at Disney World, where she ran her first marathon in January in honor of her father Hugh, who suffers from Alzheimer's disease and multiple sclerosis. (Family photo)

Courtney and Hugh Kelleigh at Disney World, where she ran her first marathon in January in honor of her father Hugh, who suffers from Alzheimer's disease and multiple sclerosis. (Family photo)

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Courtney and Hugh Kelleigh at Disney World, where she ran her first marathon in January in honor of her father Hugh, who suffers from Alzheimer's disease and multiple sclerosis. (Family photo)

Courtney and Hugh Kelleigh at Disney World, where she ran her first marathon in January in honor of her father Hugh, who suffers from Alzheimer's disease and multiple sclerosis. (Family photo)

Ballston Lake family keeps on running as man they love devastated by disease

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BALLSTON LAKE -- When Courtney and Hugh Kelleigh were young, the afternoon school bus would drop them off at The Good Times Lakeview Restaurant, owned by their parents since before they were born.

Their mom, Desiree, would have an early supper on the table, dad Hugh would join them, and the four would talk as a family before the kids spent an hour or two on their homework. No TV, no video games. When customers arrived for dinner, the youngsters became restaurant staffers, following mom to tables with breadbaskets or clearing dishes after groups departed. As they grew, Courtney became a waitress and young Hugh worked in the kitchen, or, more often, he'd follow his namesake around, helping with maintenance projects.

Mom was always the talky one, full of spitfire and loud laughs and stress when the restaurant got busy. Dad was quiet, serene; of Amish and Mennonite heritage, he had a peaceful soul, a parched wit and a profound capacity for listening. The kids treasured talking to him.

If he could understand, Courtney today would tell him how, halfway through her first marathon, for which she'd had only 13 days to train, she fell out of time and space.

"There are certain periods (of the race) that I don't even recall; I completely blacked out because it was so painful," says Courtney, now 20, sitting in the restaurant on a quiet afternoon, about the time she used to do her homework.

Courtney was running in the marathon last month in honor of her father. At 47, just five years after being diagnosed with early-onset, aggressive Alzheimer's as well as multiple sclerosis, Hugh lies in a bed at a nursing home in Saratoga Springs, blind, paralyzed, largely uncommunicative. He's been at the facility, Wesley Health Care Center, for three years.

The marathon, held Jan. 9 at Disney World in Florida, had more than 13,000 entrants, a contingent of whom, like Courtney, running to raise funds for MS. A full-scholarship student with a 4.0 GPA at Johns Hopkins University in Baltimore, where she is studying neuroscience, Courtney happened across information about the race in mid-December, long after registration and fundraising deadlines had passed. Officials suggested she wait a year. Mindful that the acceleration of her father's condition means he might not live until then, she persisted. Organizers relented just after Christmas, giving Courtney less than two weeks to prepare for a race twice as long as she'd ever before run, and to raise the required $2,000 in pledges.

The training was lonely work for Courtney, many miles on her legs, many more in her mind. The money resulted from a collaborative effort of family, friends and customers of The Good Times, which Hugh and Desiree have owned since 1989, after buying it from Desiree's parents, who acquired the longtime lakehouse restaurant in 1973.

"She said she was going to do it, and I never doubted it," says Desiree. "I'm so proud of my kids. When they set their mind to do something, it happens."

She picks up the story: "I told him it was a happening place, and he got here, a guy from the city, and was like, 'There's nothing here,' but he adapted magnificently."

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In the early years, while Desiree ran the restaurant with her sister, Hugh worked as manager of a law firm's real-estate investments. He got into fly-fishing and was the restaurant's handyman and occasional bartender, a listener favored by fishermen for their tales of angling. After a devastating 1992 fire scared Desiree's sister into another line of work, the Kelleighs rebuilt the restaurant, and by 1994 The Good Times was the family's sole means of support. Courtney was in preschool and her baby brother a toddler when dad made the break from the corporate world. For the next decade dad, mom their and kids were a restaurant family, dining together and talking every afternoon prior to serving others.

Before Hugh Sr.'s official diagnosis, his brain's deterioration manifested itself in unexplained falls and baffling rages.

"He's like my son, very quiet, very calm, and out of nowhere there would be irate mood swings, a lot of screaming and frustration, where he normally did not speak much at all," says Desiree.

Over time, family members noticed changes, as did customers.

Says Desiree, "They'd say, 'Is he OK? Did he have a stroke?' And I'd be like, 'He's fine' -- the denial thing. It was complete denial."

The kids identified differences sooner than their mother. Courtney's science mind and precision are evident when she says, "Once you know someone, you can tell something is different just by looking at them: their rate of reaction is delayed by a few seconds, or they're carrying their shoulder a few centimeters lower than usual."

The combined effect of Hugh's twin diseases has irreversibly altered the husband and father his family knew. But Desiree visits every Tuesday, when the restaurant is closed, and Hugh Jr. goes as often as he can, as does Courtney when she's home from college. Gathered at dad's bedside, they still all talk as a family, after a fashion.

"He says enough, for us," says Courtney.

"One or two words," says Desiree. "There's lots of vocal expression -- in his language, at his speed, in his mind and his conversation. ... We all know him so intimately that we can go wherever he is in his mind; we know what he's saying; we can join right in. You go wherever he's at; it's how we can be present with him."

Although science has long fascinated Courtney, her father's illness provided pinpoint focus on studying the brain.

"It's dictated what I've done, the choices I made, my goals, what I want to achieve," she says. She's majoring in neuroscience and works as part of a research team that is currently studying pancreatic neuroendocrine tumors at Johns Hopkins Hospital, and is part of another research group in the hospital's department of oncology. Courtney foresees med school and a career as a researcher battling brain diseases.

Her brother shows similar precocity in his field. An aviation-sciences major at Schenectady County Community College, Hugh earned his pilot's license in about a month last fall, the first in his class to do so. Naturally, he has a full scholarship and a 4.0, and he works for Richmor Aviation at Schenectady County Airport.

"I mostly refuel planes, de-ice them ... (and) look at really nice jets I want to be able to fly someday," he says.

Courtney and Hugh took a commercial jet, the kind he hopes to pilot, to Florida for the marathon. She started running at 5:30 a.m., about two hours before sunrise. As the day brightened, she realized she'd been doing seven- and eight-minute miles.

"I was like, 'Whoa, this is going to catch up to me. I'll never keep this pace,' " she says. The running blackouts happened as mile 20 approached, until determination superseded physical pain. She finished in 5 hours, 51 minutes, according to race records, ahead of 40 percent of the female field.

She says, "The last five miles I was like, 'It's just like an hour at the gym. I can handle that.' I think that you can't really train your body to run a marathon. It's more about training your mind; it's about setting your mind to achieve what you want to, and then doing it."

Inspired by her daughter, Desiree is planning a fundraiser for MS charities in June at the restaurant.

"If she can run a marathon, I know I can do this," says Desiree. "We're going to keep fighting."